This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Just want to chime in here and say, like everyone elese... YES, it's very common. my 4 yr old celiac son, is also allergic to casein/dairy and all forms of corn! So far with dd and myself who are gluten intolerant are free from other allergies, except dd is allergic to chocolate, but has been all along.
Oh My! Right now we are able to spend about 75.00 a week (total bill including misc, and there are 4 in our family) but with many thanks to the Lord, my childcare is growing... so starting next week, things should get a bit easier.
My heart goes out to you and my prayers are with you. I grew up in a town much like you are describing and while where we live now has more to offer.. I simply cringe at the thought of going through *this* living in such a rural area. (((hugs)))
wanna hear something funny.. today, I had the best lunch I've had in ages, and all I did differently was change my salad dressing, yesterday I had a salad with my all time favorite dressing, but was greatly disappointed. Today, I decided to mix things up a bit and use a gluten-free dressing I had in the fridge but have never used for salads before (usually used it on my Ruben sandwhiches) anyway... OMGosh!! It was so good! I think my taste buds have changed enough that things I didn't like prior to going gluten-free are now hitting the spot! (may not work with all cases but I was pleasently surprised!)
A very important thing I should have mentioned in my 1st post... while it's hard and frustrating, and at times feeling nearly impossible... I know and trust that God WILL provide our needs!!! Things may not always be the way I would like them... but I fully trust in HIS plan and protection in our life!!!
Before I get started, I need to say, I am not trying to be judgemental or hurtful in ANY way!!! This is an honest question I have... maybe we're doing something within our household that's making it harder than need be. So if your thoughts and opinions can help us see our error and lighten our load... this will be worth asking.
Many, many times (on this board and others as well) I have often seen people suggest that the entire household goes gluten-free. And while I agree with this in theory.... at least in our case (and don't get me wrong, 3 out of 4 of us are gluten-free) this is DANG HARD!!!!! I just do not understand how people can afford this!!!
Just this week, we haven't been able to buy any bread for the kids, daughter is eating fruity pebbles (going on 2nd week, and on the days she doesn't eat eggs) while I'm spending 5,000.00 to fix her teeth with braces. I am NOT happy about the junk cereal at all! We simply can not swing the special cereal this week.
I guess I need to point out that our case may be a bit different than most due to the fact my son is also corn and dairy free. But even still... we ended up having sloppy joe tacos (on chips) due to the fact of not having any bread in the house. Monday night we used up the rest of our Tinkyada pasta for spaghetti, so for left overs last night (had TONS of sauce left over) we again had to resort to the chips. While, all along, I had to make something different for son who couldn't have the corn which is in the chips and sauces.
I know we can avoid meals which need special items, and 90% of the time we do.. however, I can not tell you just how burnt out on salmon, beef and chicken we are... OMGosh!!... the CHICKEN.. 4-5 days a week, this is what we usually have.. That and eggs I've stopped eating in the mornings because I don't dare take the cereal or bread away from the kids... I usually have a salad with some fruit for lunch. (which I'm careful not to deprive ds from because he's not able to eat much more) The good news is, I've lost alot of weight. The bad news is, I'm STARVING!!!!!
I know this is turning into a vent, and I apologize, but it really is a valid question and concern I have. Is anyone else in this position?
Feel free to vent any time, that's what we're here for.
I'm sorry the in-laws just don't get it. It really does make things harder than they need to be, doesn't it? How about hubby? Is he supportive and understanding of the disease? It's been 2 years since my sons dx. My dh has come a long way.. but only when it comes to the kids. (my dd and I went gluten-free last Nov) and he while he says he's supporitive, if I state I'm craving gluten, he'll have keys in hand and ready to go get it. I guess he and I have seperate ideas of being supportive. lol
At any rate, I hope that this time the letter and reading material get "through".
A few things...
1: I've only read your 1st post, I have yet to make it through the replies and such..
2: I have no experience with enterolab. Honestly, we've never had the $ Otherwise, I think on our own, we would have tested both kids, but kept the doc out of it (based on our experience with docs.. especially GI's
Which brings me to my reply. I probably could have quoted most of your post.. for it sounds so much like my own story concerning doctors. However, this one.. really got me!!!
My ds suffered highly for the 1st 2 years of his lil life. Finally after pos blood work right after turning 2. His ped sent us to a Ped GI (he's seen others within that time, but this was at a Childrens hospital.. they were supposed to know more)
At this point in time, I had him off of dairy for nearly most of his life, and was fully relying on pro-biotics and was able to keep him from loosing too much weight.. in fact, I think he was growing pretty well at this piont (with great effort on my part!!!) However, he was still having 35-40 horrible D's in a day. This doc wasn't much concerned and said the EXACT same thing your son's doctor said to you!!! She followed that up with "He has diarrhea of Infancy" and should grow out of it by age 3 or so." HE HAD JUST TURNED 2 YRS OLD!!!!!
Thankfully, by now, I had a much better handle on things on my own, and was ready to wean away from doctors and do what I knew would be best for my little guy... without an offical dx. I took him home and right after the scariest time in our lives (which further proved things for us) (btw.. you can read all about this in this thread... http://www.glutenfreeforum.com/index.php?s...c=22701&hl= ) After that.. we fully took him off of gluten, I know it saved his life!!!
Later on his Ped tested his genes. He has one celiac disease gene and one GS gene. Some day I would like to go through enterolab to see if they can clear up other questions we have concerning Matthew (one being dairy) but that will be awhile still.
My prayers are with you and your son. If you haven't yet... let us know what the results are.
*off to read the other posts now*
On the contrary, I fully appreciate any and all suggestions. You are exactly right.. the "What?" stage is overwhelming and scary at times.. I know once we fully understand what we're dealing with, and how we can properaly help our little guy, I'll feel much better about everything.
His b-day is just short of the Sept 1st cut off, meaning even though he's now 4yrs old, he won't even start Kindergarten for another 2 years. When would you suggest contacting the district?
Also.. I'm feeling a bit nervous about the eval process. Right now, we are awaiting a questionnaire packet to fill out and return.. why am I feeling so intimidated by this??? Also the nurse said that at the eval visit, we'll be there literally all day, which, don't get me wrong, I fully understand all of this is necessary... I guess a small part of me feels that my parenting skills will be equally evaluated, and we'll walk away with them saying, he's fine.. you're the problem I know this is far fetched and silly... but honetly, I do feel I'm failing my little guy in some way. I have worked with small children for nearly 15 years now, and have had an in-home childcare for 11 of those years. With all of my experience with small, and at times difficult children, how is it that I can help and reach them, but not my guy...
Right now, he's home with me, I guess you could say, I sort of home (pre)-School him. He just turned 4. I am at this point in time, I am planning on homeschooling him up to 1st grade. Hopefully by then, we'll have a dx of some sorts. Thank you very much for your help! Some times I feel so lost!!
Would the same go for Ketchup? My ds (the one I mentioned in previous post, who is gluten-free/CF&corn free) LOVES LOVES LOVES (safe) Ketchup.. he insists that it goes on EVERYTHING!! In fact, he won't eat vegetables without it. We have to specially order a bottle every week, and he's the ONLY one who eats from that bottle!
I personally thank you for doing so. we are facing *something* with my son.. but unsure at this point as to ***WHAT*** His pediatrician suspects PDD, and is having him sent to a specialist. I am now awaiting the paper work before given the appt time/date.
Matthew has been Casein free his entire life (4 years) and has been gluten free for the past 2. I often wondered myself what kind of connection his celiac disease has to what we are now dealing with. I also wonder had he not been gluten-free/CF... how much worse would they be compared to what we're now dealing with. (which at times is overwhelming!)
Thanks again... I haven't been able to visit this board in awhile, but this is an interesting read.
Thank you everyone for your kind words. Yes, we have been through quite a bit, but honestly speaking, my faith carries me through. Also, Matthew's celiac disease is in a way a blessing. You see, both my daughter and I have had life long health problems that we have now been able to trace back to being gluten intolerant, but it took Matthew and his classic celiac symptoms to bring light to our gluten issues. My 3 miscarriages, anemia, endometriosis, chronic constipation are all due to years of overlooked gluten issues. I am thankful that it only took us 10 years to realize this with my daughter, Hopefully, it will spare her the agony of miscarriages exc... her and I both have been gluten-free for 10 months now, and just to name one... are both amazed at just how easy using the bathroom has become.
Before my sons dx.. my husband and I would joke around by saying... we have one that can't go, and one that doesn't know how to stop going... it's ironic that the answer for both of them was a gluten-free diet. It just goes to show how diverse celiac disease/GS can actually be!